A TGB READER STORY: Eat All Day, Pee All Night
The Alex and Ronni Show – 22 November 2019

When Health Professionals Disagree

No sooner had I written here about my diagnosis of pancreatic cancer in 2017 than people began telling me about cures, usually in other countries but some that involved eating large portions of “good” foods while eliminating “bad” foods.

Even before pancreatic cancer raised its head in my life, I was a firm believer in the view that if there were a miracle cure for any given disease we would all know about it.

And so, within a day or two of the diagnosis, I determined that I would follow the instructions the doctors and nurses gave me. After all, they've been treating cancer patients for a whole lot longer than I had even thought much about it and although there cannot be promises, they know what has worked – and not – over time.

When I was recovered enough from the Whipple surgery two or three weeks later, the chief oncology nurse sat me down for a lesson in how I would need to eat from that point forward. It was my first test in believing what the medical experts tell me.

Until then, I had maintained a simple, healthy diet for a couple of decades: lots of fruit, vegetables, legumes, etc., a hefty portion of fish three or four times a week with a sweet treat (ice cream, a chocolate croissant) now and then.

The nurse explained my new diet that would include four-to-six small meals a day with the kinds of proteins and fats I had not eaten in many years. I objected. She insisted. I tried to explain some more and she cut in: “The cancer will kill you long before the diet will. So do as I say.”

Yes, ma'am. Of course she was right and her instructions, modified to expand my food choices as time passed, have served me well.

Then, this year, along comes COPD. Recently, there was a nutrition lecture in connection with the pulmonary rehab I attend twice a week and guess what? The nutrition advice doesn't match. How to eat to help make living with COPD easier is a lot closer to how I ate before pancreatic cancer than how I eat now.

What to do? What to do?

Well, all right – it's not that difficult. I'm adjusting the conflicts between the two diets and so far it is working well.

But it does reinforce the idea that we – you and I, patients in other words – need to be responsible for our own health practices. It was easy before the COPD was diagnosed and I had just one condition to be aware of. Now I need to balance the two.

Old people are much more likely to have several diseases or conditions that must be managed and one kind of doctor – an oncologist, for example - doesn't know a whole lot about COPD and vice versa.

So it is our job to bring up the questions and conflicts when they occur, and that reminds me:

We old folks are the number one experts on our own bodies. We each know how ours operates, how it feels when it is working well and when something is not right.

We know what kinds of pain or other discomforts occur and we have learned how to treat them with the help of our physicians. And we know when something is wrong enough to require a visit to the doctor.

Some of you undoubtedly think this is all elementary and obvious, that you have always lived this way in regard to your health. But it hasn't been so to me. Let me confess here and now that before the cancer diagnosis, I hardly ever saw a doctor. I often went four or five years, maybe more, between visits.

I was just lucky that hardly anything happened beyond a bad flu now and then.

It is only now, living with two serious diseases, that I have come to see that it is up to me in a much larger sense than I had thought about before, to manage my health, tapping the knowledge and expertise of the appropriate physicians when necessary.

Remember a week or two ago when I wrote about my mother's saying, “Too young we're old, too old we're wise?” This is a perfect example of it and instances of my ignorance are piling up fast recently.



Comments

At 72, I'm a lot like Ronni was before her diagnosis -- I live (and eat and exercise) in ways that feel to me like a good life. And I don't attend to whether this is "healthy."

I suppose eventually we all must, though I think, since we've only got the life we have, living it so it feels good and as fulfilling as circumstances allow is pretty okay.

Ronni, thanks for engaging with and sharing what it is like to manage two diagnoses.

We are dealing with a similar problem. While Jim was in rehab, the therapists ordered a brace to be made for his right leg, which is often drawn up due to a stroke he had in 2007. The brace was to hold his leg in a "straight/flat" position, especially when he sleeps. His hamstrings are very tight in that leg.

Our current physical therapist wants him to wear it at night, but the occupational therapist (whose job it is to fit the brace to him and set the angle of it at the knee) refuses to set the brace, saying all it will do is make his leg sore and therefore difficult to do his exercises.

We are trapped in therapy hell and we don't know what to do about it.

It is always best for me to be my own advocate and to be very well informed. I truly love my intelligent, caring doctors but sometimes have to disagree with them. I have a new-fangled problem called Alpha-gal Syndrome, a food allergy created by at least once tick bite. My internist, who is brilliant, did not think of testing me for AGS after 13 days of diarrhea. I put it together myself based on nature newsletters I get She was so relieved, said she was tearing out her hair cause all the other tests were negative. She says that I am brilliant! The allergist she referred me to said while I had to avoid all mammal meat, I could still take dairy without problems. I told him absolutely not because I had had a small amount of milk in a sandwich bun and got sick from it.

Food has become the bane of my existence. I tried to eat right for my heart, but my stomach and intestines rejected that diet. I try to eat right to have more energy, but I get constipation. Some foods help with constipation but causes gas and bloating. Sometimes I think I shouldn't eat anything at all. I've long had to give up all my favorite foods. My goal now is to eat whatever my body doesn't bitch about. I even wrote a blog about how I wished Purina made People Chow and if they did I'd eat it if my body didn't complain and it provided all the nutrition I needed.

Ronni is certainly right about one thing, older people actually DO know more about their bodies. Doctors, like auto techs, see a lot of different problems. Sometimes they wear blinders. Older people have lived in their flesh for many decades and often know when something is actually haywire. Self medication got me through 21 years in the military and even now sometimes helps me in explaining my myriad problems to a doctor. I consider my doctor an advisor vs. the last word. B

Hopefully this will help , Kenju. As an RN, retired for many years I'm in no position to be giving "medical" advice, but I can speak from experience.

You said,"Our current physical therapist wants him to wear it at night,"
In my experience I have found current therapist's to be the best one, Kenju, particularly with issues that require long term bracing...too many to mention in my own family. The reason is, the night time brace (hopefully in a gentle normal flexion) keeps the limb from assuming a poor or extreme position while sleeping. Then during the day you can build real strength letting Jim's own tolerance and the therapist be your guide. We have to trust our own bodily responses and be guided by that. We only get one of them !

Consider simply trying the new suggestion briefly and letting that guide you. Change is always worth "trying" in my life and I never argue with success!!

This confusion created by the battling therapist is NOT helpful nor therapeutic. Bernie's comments above are great, by the way.
I hope this helps. C.

Charlene, thank you so much for responding. I told the PT today about the OT's reticence to fit the brace, and he took home the printed info that accompanied the brace, to read it over. I hope he will decide to fit the brace himself - as long as he thinks it is a good thing for Jim.

I will try to remember to let you know what happens. Thanks again!

.....and then there's trying to reconcile the advice given by a naturopath or Chinese medicine practitioner with that given by an MD who practices Western medicine exclusively. In my experience with the practitioners in my pantheon, they've all been professionally trained and are trustworthy but have different views about how our bodies work. Some are better at treating some kinds of conditions than others. For instance, I wouldn't go to my naturopath for a colonoscopy but I might rely on her or Chinese medicine for nutritional advice. As the patient, sometimes this takes some trial and error.

In the past, my naturpath and MD worked well together for a long time. Sadly, both have now retired and my new (young) MD says ".....well I suppose it won't hurt you...." -- discounting anything she didn't learn in medical school. And Medicare won't pay for anything not Western-based.

It's hard to to be in the middle.

Juggling the opinions of multiple doctors can be frustrating and irritating. I try not to offend anyone, but as many of us agree, we know better what works for us and what our bodies need than does somebody who sees us two or three times a year. My main goal is to keep the balls in the air so as not to run head-on into the egos of the practitioners who control my access to pain and anxiety medication.

But having reached the age of 84 and dealing with heart disease and colon problems, not to mention arthritis and fibromyalgia, I feel entitled to make my own decisions. I don’t need more aggravation added to what I already endure. That means, for one thing, a diet that consists of the limited number of foods that taste good to me and that don’t have any terrible GI effects—I call it my “fuck-it diet.” I have never been one to follow so-called “doctor’s orders” and I’m not going to start now. Maybe I should have made better choices in my youth, but I’ve always hated vegetables and loved carbohydrates. And somehow I made it to old age using my own intuition.

I'm going through a similar challenge with trying to sort through various dietary recommendations. I've maintained a healthy diet, as Ronni indicated, for decades. Simple foods, lots of produce, whole grains, low fat dairy, little meat, rare junk food or restaurant food etc. Some treats with sweets being a lifelong weakness.

I have a new primary doc, an MD and I asked her for a referral to an osteopath (DO) colleague. Both are young women. I have been into complementary/alternative health practices for decades, at least at the level of being informed. I admit to remaining skeptical about both the ingredients and the efficacy of supplements, chiropractic, acupuncture and basically anyone who promotes a product or service that they happen to sell!

I had a long visit with the DO, and she gave me a long list of suggestions which are completely overwhelming and as Ronni stated, contradictory to some other "best practices" such as low fat dairy v. whole milk. I Googled the "anti-inflammatory elimination diet" which is very strict - no dairy, gluten etc. I have a lot of pain and I've been giving all this a lot of thought. As Ronni suggests, I'm well aware how speculative much of this can be.

I have obtained a referral to a nutritionist and I am looking forward to that, since despite some confusion and mixed messages, I strongly believe in the importance of lifestyle. Meanwhile, I've been going thru my pantry and refrig and giving away food that is high in SUGAR. I figure I can't go wrong with reducing my sugar intake. Love that quote that restricting your diet may not make you live longer, but it will seem longer LOL.

As I write this, I'm enjoying a cup of hot cocoa, made with Hershey's dark cocoa, hot water and some whole milk. No sugar! It's surprisingly not bad!


Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been posted. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)